Oesophageal Patients Association
3,675 members2,214 posts

Week one done - ✔

Hi everyone.

Just a wee update on my husband. Week 1 of chemo is done. So far so good. It's been better than we both expected I think.

There's been 1 instance of nauseous and 1 tiny bit of sickness when his steriods stopped and that's been it. Undertstably he is very tired and he's getting frustrated as he can't do much, but tough he'll just have to get used to me doing most things for a bit 😂

The oncologist has been great and even phoned through the week to check up on him after he had a "funny turn" during his discharge from hospital. The place was like an oven, he was too hot and his bp had dipped low. But he's fine.

Now, here's the strange thing. Since he started chemo last Friday (22nd) he's been eating solid food's. Not 1 liquid supplement has passed his mouth. He's been craving savoury things, things we wouldn't normally eat like sausage rolls and pies with beans. He's managing chunckier soups like broth or noodles, pasta bolognaise, shteddies for breakfast etc etc etc. Now I can't see it being the chemo having kicked in this quickly, it's most probably the steroid's reducing the inflammation. Whatever it is we'll take it for now.

Oh and thanks to the person (I think it was Bruce) who said about drinking plenty water, hubby was sure he was drink enough , but I've managed to get him to increase it a little and i think it's doing him good. (Other than the multiple pee stops, but least he's getting exercise going up and down the stairs to the loo)

Thanks again to everyone on this wonderful page. You've all been super helpful. 😁😁

15 Replies
oldestnewest

So pleased to hear you are through week one, and the eating is improved. Dave also found food didn't stick so much, so you may be right over the inflammation being reduced.

We are both sending our best wishes and hope it continues to go well xxxxx

1 like
Reply

Thank you LynnBibb

Yea we are definitely looking at the eating part a very positive thing. Considering he couldn't tolerate any solids at all (apart from the odd ginger snap) to actually asking for an albeit small meal it's great.

On the week 2 now.

I feel like I'm wishing my life away just now, but just want to get this done and dusted to get on to the next part.

Reply

Hi Lucy the Chemo although tough after Tony got into it was a success and he managed to eat really well ....no more food getting stuck ! Hope he continues to be ok , Tony was on EOX . Don't want to sound negative but although no sickness he did suffer dreadful cramps and most of the time thoroughly exhausted......however on the positive side he continued to work when he could ( have you seen someone about the benefits you can claim ) ? Urge you to ...it helps.

Like you I want an end to this nightmare that stared last Feb ...but this brilliant site has been comforting and reassuring and made me realise it's a long long process and very emotionally draining but you're NOT alone xx

1 like
Reply

Hi Debbie.

Thanks for that.

Yeah husband has had some stamach cramos and also in his forearms too, but a quick massage from me helped relieve it.

Unfortunately as I work full time and we own our own home we are entitled to zero benefits what so ever. Don't even get me started on the fact that we've never claimed a bean all our working life and paid in thousands of pounds over the years, but cant get help when its needed! Anyway rant over..😂

So far so good.

Reply

No that's not right Lucy ...so do we ...we don't have a mortgage. My hubby is in building trade ...we moved for the first time after 30 years this January because we lost my darling brother in law to Pancreatic cancer and so Tony wanted to start a new project while still fitter than ever been ! Also had finished mortgage so funds there to completely knock about a detached bungalow! A month after we move ...."symptoms " !! World fell apart ! I work too like you and like you we've worked all our lives and never claimed . We had a meeting with McMillan benefits lady ( Oncology were insistent to arrange it ) as we own home and have savings from sale the only thing we were entitled to is P.I.P ( personnel independence payments...Not MEANS TESTED !! Tony only gets statutory sick pay which is very little but the PIP payment is every 4 weeks and is such a great help indeed !! Back dated from the time they filled forms in for us so we had something to smile about for a change . Also she put forms in for a "blue badge" for him ....did laugh about that as that's something my mother in law has NOT MY HUSBAND ...NOT FOR YEARS !! or so I thought , but he was granted one and it has been worth its weight in gold during bad times on Chemo and especially the last few weeks following the surgery !

You're given all the forms / booklets etc when diagnosed with Cancer .....make that appointment.....or double check !!!

Good luck

Deb xx

1 like
Reply

Thank you so much Debbie!!! I had no idea about PIP, I thought you only got that if you were already claiming benefits, had a quick look last night and I've got husband on the case this morning whilst I'm at work. Just a bit confused as to how you can "prove" you will be ill for 9 months. I'm sure I'll work it out.

I'm going to double check the rest of the information we got. Being honest I was more concerned with treatment plans etc when we were speaking to the CNS and oncologist. I'm a pharmacy technician so drugs/treatments are my thing and I asked as many questions I could think of, that was my focus when husband was diagnosed as it was the only thing I felt I could do if that makes sense. I now know the ins and outs of every single drug he is taking down to the chemical make up of the tablets, when and why it was discovered and the likely peaks and troughs of his energy levels according to how the tablets work and when he takes them - lol It was what kept me going when it felt like there was nothing to do but wait and wait and wait!

Now the treatment has started and is going well I need another "project" to keep me busy of an evening. :-) So I shall be looking in to everything. Husband quite likes the idea of a blue badge as the parking charges at the hospital are extortionate (£10.50 a day!)

Thanks once again for the heads up, much appreciated. :-)

Reply

The lady filled in the forms which are a mind field and did say that it may not come through till months or that we may have to have a face to face interview before it's granted but neither occurred! It was paid the day of Tony's surgery straight into account and have received the 2nd one exactly 4 weeks after! Let me know xx

Deb xc

Reply

So glad your husband is doing so well and it’s encouraging that he is managing to eat again . My husband had his second cycle on Friday and has coped well , like your husband had a bit of discomfort after the steroids stopped but he had a longer course of anti sickness meds’ as he is still NG fed . His body hair is shedding fast which isn’t a problem , the only thing that’s upsetting for him has been nil by mouth for 4 months . Hopefully after the 3 rd cycle he will get CT scan and if it’s shrunk they may see if he can get fluids down . It’s good to know some else at a similar stage , so thanks for posting . Jane .

1 like
Reply

Hi Jane.

That must be hard being nil by mouth for so long. I know my husband was starting to struggle with nothing but liquid and soups. Especially the rich creaminess of the supplements he was having. He is loving the fact he's managing to eat, even if it is a little bit, just the sensation of chewing is making him feel better.

He's had a really good day today. No where near as tired as he's been of late, he looks refreshed were hoping he's over the worst of the nauseous feeling he's had recently.

Fingers crossed your husband can start eating soon, it would give him such a lift.

2 likes
Reply

Great to know that the chemo isn't too bad. Let's hope your husband continues to tolerate it okay - but I do remember that for my husband (6 years ago now, still going strong at 82) the final 3 weeks were tough.And I also rmember how weird it was to vacuum the body hair out of the bed. The "Julius Caesar" haircut he's still got, it's fine.

Good luck to you both, remember to fit in some fun in the non-chemo intervals.

2 likes
Reply

Great news. Glad to hear that your husband has got an appetite. It will make such a difference to be able to eat. The hair loss is a bummer. I'm going through that at the moment. It is no fun finding your hair everywhere.

Sending hugs to you both.

AM x

2 likes
Reply

Hi Lucy thks for liking my post, Just regarding the sickness. I had a terrible time with being sick and they tried all the anti-emetics on me which didn't work except one which is called Emend (Aprepitant), its expensive thats why they don't mention it at first, the Ondensitron I think it was called made me constipated which was extremely painful. Best of luck to your husband, I can tell with you he is going to get through it, from my own personal experience, you, like my wife was to me, are very important to him especially at this time in his life.

Try and get as much weight on him as possible. Peanut butter cookie are good and easy to make.

1 like
Reply

Hi there.

Thanks for you reply.

We are now only 5 days until the end of the 1st cycle. It's going in really quickly.

Overall I would say it's been an alright experience much,much better than I think either of us expected it to be. The only bad bit (and I say that loosely) was when the steriods stopped. He was rattling - literally. But once they were out his system he was fine.

He's still continuing to eat solid food's which is fantastic. I'm sure Greggs the bakers down the street are wondering why their profits have gone up! 😂😂

All in all for a step in to the unknown its not been too bad. Just hope his bloods are fine on Wednesday to allow cycle 2 to start on Friday..👍👍

Thank you for your kind words of encouragement too. 😀

Reply

Hi Lucy glad to hear Chemo going well ! Hubby starts post op Chemo next week but dreading it more this time, so weak . Had to have an OGD

done almost two weeks ago and today called hospital as becoming an issue again already ....I'm so sorry for him x

Reply

Hi Lucy

My hubby Tony is virtually bald on top anyway apart from having a "grade 2" round the sides and has a "goaty " beard ! Funny thing is he lost his beard and eyebrows during pre-op Chemo but since surgery he could almost shave twice a day it's so thick ...but nothing on his head 😟

Reply

You may also like...